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Supporting children when a parent has a life-threatening illness: the role of the community practitioner.

Introduction

Working with the children of patients who have a life-threatening illness can present professional and emotional challenges for practitioners, especially when their primary role is to provide medical care and support to the patient. Discussing the emotionally ladened topic of serious illness and possible death is often a difficult concept to have to contemplate and yet research has highlighted that these conversations can make a significant difference to how the children cope with the immediacy of the family crisis (Fearnley, 2010).

It has been estimated that 53 children experience the death of a parent every day in the UK (Child Bereavement Network, 2008). During the last decade, service provision for bereaved children has gained momentum (Rolls and Payne, 2004; Willis, 2005), as has research into the effects on children when a parent has died (Ribbens McCarthy, 2005), however, it would appear that there remains less recognition of the needs of children when a parent is at the end of life (Saldinger et al, 2004). Kennedy et al suggest that 'childhood bereavement literature is growing exponentially but coverage of pre-bereavement is less evident' (2008: 164). Furthermore, these children within the UK are not recognised by the Children Act 1989 either as Children in Need or Children at Risk. Moreover, in the Government initiative Every Child Matters, there remains no acknowledgment of the needs of bereaved children and their families (Willis, 2005) or children who are living with a parent who is dying.

Being diagnosed with a life-threatening illness is a crisis and challenge that can affect every element of the patient's life including their sense of self, their relationships with self, family and friends and their view of the world (Turner, 2004). The emotional distress that accompanies the diagnosis is likely to be exacerbated if the patient has dependent children (Thastum et al, 2008). The emotional struggle for parents in relation to their children, coupled with the enormity of the situation can then increase stress and anxiety for all the family and as a consequence potentially impact on their role as parents. Rauch (2007) reflecting on a decade of professional practice, observes that frequently patients report that their initial thoughts after diagnosis are their children and their needs.

Communicating and sharing information with children is an important factor in supporting them when a parent has a life threatening illness or has died (Christ, 2000; Rauch et al, 2002). However, Huizinga et al conclude that 'little is known about the effect of a stressful event such as cancer on communication patterns in families' (2005: 1957). Anxiety is heightened, according to Beale et al (2004), when the children are not provided with adequate information about their parent's illness. This is supported by Christ's (2000) research where nine- to 11-year-old children reported that regular medical updates about their parent's illness were helpful. The value of having information and being party to conversations with parents about their illness was also evidenced in research by Thastum et al (2008). The findings from this research showed that 'all the children knew the name of their parent's illness: with few exceptions they had been informed by their parents shortly after diagnosis' (Thastum et al, 2008: 129).

However, the prospect of telling children that their parent has a life-threatening illness is, as MacPherson (2005) suggests a difficult thing to contemplate: 'There can be little doubt that the task of telling a child that their parent is dying is heart wrenchingly difficult for the dying parent, the well parent and the health care professionals involved in their care' (MacPherson, 2005: 113).

Turner et al (2005) describe how parents often experience uncertainty about how to discuss their illness with their children. The parents in the research stated that they did not receive any support or guidance from professionals involved in their care about communicating with their children. Furthermore, respondents in a later study stated that the health professionals did not engage in any discussions about the impact of the cancer on their children (Turner et al, 2007). This is congruent with findings from Elmberger et al (2005), in their study mothers with cancer reported that professionals did not explore their concerns about their children and furthermore, no support was offered.

However, research consistently evidences how imperative it is for children to be prepared and informed about what is happening within their family to ensure that the frightening landscape of parental terminal illness and death is navigated as smoothly and easily as possible (Christ, 2000; Rauch et al, 2002).

The important role community practitioners have in supporting children and their families when a parent has a life threatening illness will be discussed, drawing on research that explored children's experiences when living with a parent who is dying.

Study aim and purpose

The rationale for the research was the desire to develop a greater understanding of children's lives when living with a parent who is dying. Therefore, the aim of the research was to explore children's experiences of living with parental terminal illness.

It was important that the primary participants were children who were living with parental terminal illness and that their voices were paramount. Alderson (1995) notes that children have in the past been denied the right to participate in research and have their voices heard. Therefore it was hoped that by utilising a qualitative approach, the children would be afforded the opportunity to be heard. Mishna et al (2004: 450) suggest that 'qualitative research provides an opportunity to tap into the richness of children's thoughts and feelings about themselves, their environments and the world in which we all live'. Tapping into the richness of children's thoughts, feelings and experiences was at the core of the research and as Kellett and Ding (2007: 165) remind their readers 'children are themselves the best source of information about matters that concern them'. An ethnographic approach was adopted that included semi-structured interviews and a focus group. Crang and Cook (2007: 1) writing about ethnographic research suggest that through these methods the researcher is better able to understand 'parts of the world more or less as they are experienced and understood in the everyday lives of people who 'live them out'.

It had been planned that the research would be prospective, insomuch as the participants would be children living amidst the palliative stages of their parent's illness. However, after being granted favourable ethical approval from the University of Derby, England and the NHS Research Ethics Committee, seemingly impenetrable barriers were encountered which prevented meeting with children whose parents were at the end of life. As a consequence, the focus of the research was amended to accommodate these unforeseen issues and the study became retrospective. Study participants were children and young people who had been bereaved of a parent, parents and professionals from health and social care backgrounds that worked and supported patients and their families. There were 28 respondents who participated in the semi-structured interviews--seven children and young people (aged between nine and 24 years), four surviving parents and one terminally ill parent and 16 professionals, additionally eight bereaved children (aged between seven and fifteen years) were involved in a focus group. The respondents were recruited from hospices and specialist palliative care centres and a purposive sampling approach was adopted.

The participants were invited to take part in semi-structured interviews where they were asked to talk about their experiences. In addition, one focus group was held with children who attended a bereavement support group. Again in this session, the children and young people were invited to discuss their experiences and memories of living with a parent who was dying.

An important ethical consideration, in recognition of the sensitive nature of the research, was the need to have in place robust strategies to support participants. Therefore, it was agreed that qualified staff from the hospices and specialist palliative care centres would provide emotional support, if required, following the interviews. The children and their parents were advised of the availability of this support at the beginning and conclusion of the interviews.

The interviews were transcribed manually; it was felt important that this should occur to allow submergence into the data from the outset. This is congruent with Fraser (2004: 187) who, writing about data transcriptions states: 'while time consuming, transcribing the interviews yourself carries many benefits. The main benefit derived is how close you are able to come to the stories'. Template analysis was employed to analyse the data whereby 'issues such as the reflexivity of the researcher, the attempt to approach the topic from different perspectives, and the richness of the research produced, are important requirements' (King, 2004: 256).

Findings

Key findings included the importance of communication and information sharing, the differing ways that children manage, or fail to manage, the changing situation within their families and the crucial role professionals have in supporting this population of children. Additionally, within the findings the theme of change and upheaval to family life, as a consequence of the parent's illness, was highlighted.

The accounts from the children, their parents and professionals were very similar and offered consistent insights into some of the issues children experience when a parent is dying. The discussion below will focus on the overarching finding which concerned communication and information sharing and the interplay this has with professional practice and the role of the community practitioner.

Discussion

The importance and relevance of age appropriate communication with the children was discussed by all the participants. The findings evidenced that the quality and quantity of information given to children corresponded with how well they coped, or in some cases did not cope, during their parent's illness and into the bereavement period. A predominant feature of the children's accounts was that whilst they welcomed, and at times actively sought opportunities to talk about what was happening, there was also a general consensus that such opportunities were limited and often stymied by the adults.

Different reasons were proposed, by the professionals, about why parents and professionals alike are often reluctant to talk to children about the illness and its prognosis. These included the fear of upsetting the children, believing that they were too young to understand or know what was happening, wanting to protect them, and not knowing what to say. Professionals spoke about their concerns of 'making it worse' if they talked to children about the illness. However, significantly one professional observed that the worst had actually happened and no amount of protection could prevent it from being any worse. As they observed, the parent had received a terminal diagnosis and it was improbable that anything more could contribute to the child's feelings of confusion and sadness, and that in fact this silence was counterproductive and prohibitive.

Other reasons cited for this reluctance to include the children were that the conversations would take too much time and also that there was a fear that talk about illness and possible death would open up 'a can of worms' that the professionals would then be unable to manage.

The community practitioner's role

The research findings contributed to existing knowledge and highlighted the significant role all practitioners have in supporting the children, whether this is through direct work with them or indirectly with the patient. However, the research also indicated that there was often a tendency for the professional gaze to be focussed on oncological staff, the specialist palliative care practitioners and nebulous 'specialist staff' who, it was thought were responsible for communicating with the patients and their children.

There appeared to be a feeling of specialism and elitism that credits the 'experts' with the knowledge to offer support to the children. However, this is counterintuitive because often it is the specialists within the community who have a more embedded relationship with the family. Community practitioners will often have had a professional relationship with the family prior to the diagnosis and as such will be likely to have a deeper and more thorough knowledge of their functioning and communication styles. This is advantageous knowledge to have during the critical period following diagnosis and could make a significant difference to the extent that the children within the family are included, or excluded, from discussions.

Moreover, the patient and their family are more likely to have some level of rapport with the practitioner and consequently feel more at ease in their presence, less fearful and more able to spend time exploring pertinent issues that are not directly related to the illness or its treatment.

It is probable that when community practitioners are involved with the family, they will have a more detailed, accurate knowledge about the patient, including knowing whether there are dependent children who should be considered. This type of vital information can be overlooked at clinical appointments where the focus is stringently with the patient, their diagnosis, prognosis and treatment. Moreover, the knowledge and expertise in child development and health, gained through specialist training and experience again means that the community practitioner holds a privileged position in working either directly with the children or supporting the family (and other professionals) to engage in those 'difficult' conversations that people often understandably try to avoid. Therefore, the community practitioner could hold the key to a necessary, but often overlooked element of practice that can be the difference between the children being able to make some sense of the situation and thus find strategies for managing the familial crisis or them floundering due to a lack of understanding about what is happening.

The community practitioner has a 'visible presence' that allows them to see and be seen by the children. This is important as it gives the children the opportunity to engage with members of the medical team and thus develop a feeling of trust in the people responsible for the care of their parent. However, a caveat needs to be included here, a criticism in the research that was voiced on a number of occasions by the participants related to the timing of home visits. It was noted that professionals generally visited the patient at home during the school day and thus an opportunity was lost whereby the professional could talk with the children and assess how they were coping.

Within their role, the community practitioner could take on the role of 'broker' between the family and specialists involved in the patient's care, and within this promote the needs of the children. Their observations of the functioning of the family, within the confines of the home, could offer a more robust and accurate assessment of how the patient and their family is generally coping.

The community practitioner will be in the privileged position of observing the patient in a non-clinical environment where they are likely to be more relaxed. Here discussions about seemingly mundane elements of family life, for example the children (which the patient might not see as being appropriate to discuss within the formal setting of the consulting room) can be explored. This important information can then be shared with the other professionals involved with the family and thus a truly holistic approach embraced.

Finally a significant difference between the community practitioners and the 'specialists' is that they are more likely to stay in contact with the family following the death. Consequently they are better placed to provide some continuity of care and remain as a source of support to the children.

Conclusion

The value of including children in conversations about parental illness and possible death cannot be underestimated. This inclusion is the main conduit for helping them to make some sense from what is occurring whilst also showing a level of respect for their position within the construct of the family. Parents and family members are understandably often reluctant to discuss the illness with the children, the reality of the facts being too difficult to contemplate. However, children consistently agree that being included and having an awareness, based on fact, about the illness is far more preferable than being excluded.

All professionals involved with the family at this time have a role to play in ensuring that the children are involved in discussions and information sharing to the extent that they choose. This role could include the provision of direct work with the children or indirectly through support offered to the parents and other significant family members. The community practitioner has a vital role here which needs to be nurtured, developed and celebrated. Their professional relationship with the family will often place them in a unique position whereby they have a more extensive knowledge of the family's functioning and embedded communication practices.

This intrinsic knowledge can then be concurrently used to support the patient, the family and the children, whilst also informing the wider medical team about the holistic needs of the patient, including the necessary support needed for the children. Research is tentatively moving the needs of the children of patients out from the shadow of apathetic thought into the middle ground where their needs are hesitantly being recognised as being consequential. The community practitioner is well placed to champion this shift and help, through practice, to continue raising the awareness of others about the frequently unvoiced and unheard needs of these children.

Conflict of interest: None

Key points

* The needs of the children of parents with life-threatening illness are often not recognised by the professionals supporting the patient

* Age-appropriate communication with children is crucial to help them to begin to make some sense of what is happening in their family

* Children consistently agree that being included and having an awareness, based on fact, about the illness is preferable than being excluded

* Community practitioners have a vital role in supporting the children of patients; however, this is not always recognised or celebrated

References

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Child Bereavement Network. (2008) Available from: www. childbereavementnetwork.org.uk [Accessed August 2008].

Christ GH. (2000) Healing Children's Grief. Surviving a Parents Death from Cancer. Oxford: Oxford University Press.

Crang M, Cook I. (2007) Doing Ethnographies. London: Sage.

Elmberger E, Bolund C, Lutzen K. (2005) Experience of dealing with moral responsibility as a mother with cancer. Nursing Ethics 12(3): 253-62.

Fearnley R. (2010) A Lonely Place to Be: Children's Experiences of Living with a Parent who is Dying. Unpublished PhD Thesis, University of Derby..

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Kellett M, Ding S. (2007) Middle Childhood. In: Fraser S, Lewis V, Ding S, Kellett M, Robinson C (eds). Doing research with Children and Young People. London: Sage Publications.

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King N. (2004) Using Templates in the Thematic Analysis of Text. In: Cassell C, Symon G (eds). Essential Guide to Qualitative Methods in Organizational Research. London: Sage Publications.

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Rachel Fearnley PhD BSc(Hons) DipSW NNEB Independent Researcher/Consultant

Correspondence: rachel.fearnley@yahoo.co.uk
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Title Annotation:PROFESSIONAL AND RESEARCH: PEER REVIEWED
Author:Fearnley, Rachel
Publication:Community Practitioner
Date:Dec 1, 2012
Words:3478
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